“I Know This Is a Personal Question, But…”

A few months ago, I shared a Lyft ride with a blind friend.
She was dropped off first. During the ride, we chatted about our jobs, homes,
and other common topics of discussion among 30-something professionals.

Our driver was quiet during our chat, but after my friend
was dropped off, he asked me, “So…What happened to you and your friend?”

I calmly explained that nothing happened to us, that we are
both blind, and that I didn’t know her medical history but in my own case my
blindness is genetic. I then went back to my MP3 player.

A few minutes later he asked me if I had any siblings. I
replied that I have an older sister. The next question: “Is she…OK?”

A bit taken aback, I replied that both of us are “OK” but
that she is sighted.

One of the interesting consequences of ridesharing for
disabled people is that we often become targets of seemingly-innocent questions
like these while in the car with strangers. But, this issue was prevalent far
before Lyft and Uber were a thing. Many of us field curious questions from
strangers of all ages, whether on the street, in class, while out with our
children, or in a multitude of other settings.

Some of the most common questions involve the cause,
duration, or severity of our disabilities. Others may ask us how we perform
specific tasks or about the assistive technology we use. Occasionally,
questions regard “taboo” topics like sex or toileting. (I have not yet been
asked about these things, but some of my friends and colleagues have).

I consider myself an open person. There is really very
little I keep private, and as someone with a curious streak myself, I usually
indulge these questions. But, as a member of the larger disability community, I
need to explain why such questions can, at times, cause harm. There are a few
reasons:

*In my own case, the cause of my disability was boring-it
was just a random genetic glitch and there was no trauma involved. But for
others, their disability may have been caused by a traumatic event, or
disability onset could have been traumatizing in itself. Even the most innocent
questions can unintentionally re-traumatize.

*When someone only wants to talk about my disability, it can
feel a bit dehumanizing or like I am nothing more than my disability. In the
example above, my Lyft driver could have asked about my job, my house or any of
the other things that came up in my conversation with my friend, but instead,
he just focused on my disability. When strangers want to focus only on my
disability, it makes me wonder if they think I can add any other value to a
relationship.

*As a cultural norm, certain topics are generally considered
“intimate” topics only discussed between people who know one another. At least
in western cultures, medical details are usually not discussed at length
between strangers. Asking intimate questions so early in a relationship can
suggest an inappropriate level of intimacy in much the same way as an
unsolicited physical contact.

*Some questions can be worded in an ableist way, e.g., “Is
your sister OK?” implies that being blind is not an “OK” way of being.

*Sometimes the disabled person is too busy, distracted or
tired to answer questions. For example, when I’m trying to get a research
article finished ahead of a deadline, that’s not the time to ask me how my
screen reader works or to ask complicated questions about how severe my
blindness is or why I travel with a cane instead of a guide dog. Same if I’m
running after a bus, or half-asleep in the back of your car after a long day.

So, if you are genuinely curious and want to learn more
about disabilities, what should you do? Consider the following checklist as a
guide if you want to ask questions of a disabled stranger in your presence:

*Would I feel uncomfortable asking this type of question of
a stranger without disabilities? For instance, would I feel uncomfortable
asking a stranger how they got their scar or their bald head, or about their
sex life? If it feels like a “personal question,” it probably is.

*Is this a question I can ask Google instead, or search the
disability blogosphere?

*Does the disabled person appear rushed, preoccupied, or
tired?

*Is there something else I could bring up first, to build
rapport and get to know the person before broaching the disability topic?

If the answer to any of these questions is “yes” then consider holding off on discussions of disability until you have built a closer relationship in which some questions become part of mutual self-disclosure. In the meantime, you can learn a lot and satisfy curiosity by simply getting to know us as people. The best way to learn? Chat with us, ask us to dance, hire us, work with us, play with us. If your kids are the curious ones, introduce them to play with disabled kids, or with the kids of disabled parents. And check out this post on answering kids’ questions about disability!